Executive summary and recommendations
2008: End-of-Life care for people with dementia
The present paper constitutes the input of Alzheimer Europe and its national member organisations to the ongoing discussions within Europe about end-of-life care for people with dementia including the appropriate support of carers. It is the result of discussions carried out in a multidisciplinary group composed of experts in the field of palliative care, medicine, psychiatry and psychology, as well as carers, in collaboration with the board of Alzheimer Europe and its member associations.
The following sets of statements and recommendations are extracted from the full guidelines, which include recommendations and our position on various care-related issues, and can be found in section II of this document. A brief consideration of some of the ethical issues linked to the good care of people dying with/from dementia can be found in Annex I.
People with dementia
- The dignity of the person with dementia should be respected at all times.
- Alzheimer Europe is of the opinion that a palliative care approach should be adopted for people with end-stage dementia as attempts to cure and prolong life are inappropriate for them. We nevertheless respect the right to individual choice.
- The aim of treatment and care should be to maximise the quality of life and level of comfort of the person with dementia and not to prolong the life.
- It should be provided if and when needs arise and before the situation become unmanageable.
- Consequently, futile and harsh or invasive treatment, in fact any treatment with no prospect of improving quality of life, should be avoided.
- Preference for place of care, where it is known, should be respected, but in all cases the choice of care setting should take into account the best current interests and needs of the patient and carer. Their wishes, including those expressed in advance, should be followed wherever possible.
- The person with dementia should be consulted and kept informed about care and treatment issues to the greatest extent possible.
- There should be no discrimination against people with dementia in terms of treatment, care or attitude e.g. because of their disease or on the basis of age, gender, cultural identity, language, sexual orientation or economic status.
- Carers should be provided with practical support as well as emotional, spiritual and psychological support.
- They should be entitled to an assessment of their health and psychosocial needs leading to a care/support plan. Such assessments and adaptation of the care plan may need to be repeated regularly.
- With regard to grief and mourning, which may have a delayed onset, the provision of support should, if necessary, extend beyond the death of the person with dementia.
- Carers should be consulted and involved in the care of the person with dementia provided that they are able and willing to do so.
- Carers should be informed and reassured about possible symptoms which may occur and about the possible consequences of any decisions they may make about treatment and care.
- Carers should be provided with specific training.
- Carers should be consulted about options for anti-dementia drugs.
- Dementia should be an obligatory undergraduate component of doctors’ training. Training in dementia care should also be a component part of training courses in nursing and of continued further education in the medical profession.
- Other healthcare professionals, non-medical professional carers and palliative care volunteers should also receive appropriate training in dementia care and communicating with people with dementia.
- Additional training/discussions should focus on the ethical issues involved in palliative care for people with dementia as well as other difficult issues such as breaking bad news, communicating with the person with dementia, surrogate decision-making and discussing the prognosis and difficult treatment options with carers.
- Mobile palliative/geriatric/psychogeriatric care teams should be set up in order to provide assistance and advice in people’s homes and in residential care settings.
- Every effort should be made to ensure continuity of staff.
- All health care professionals and volunteers working with people dying with dementia should be provided with support if needed.
- A dementia care coordinator/advisor should be appointed for every person dying with/from dementia irrespective of the stage of the disease and of where care is provided.
- The dementia care coordinator/advisor should ensure that the various health care professionals are aware of the global needs of the person with dementia, keep them updated on how those needs are being met and inform them of changes in the person’s condition. Such coordination should ideally be extended to other non-medical or paramedical professionals such as occupational therapists, religious and spiritual counsellors, therapists, social workers and dieticians. An alternative system would be an integrated care pathway.
- A key/assigned care worker should be appointed for every resident with dementia in a nursing home or residential care institution (with a stand-in so as to allow for holidays and sickness.
- Nursing homes and residential care institutions should employ specialists in dementia care.
- As most carers have in-depth knowledge of the person with dementia, are aware of his/her preferences and are experienced in communicating with him/her in a meaningful way, professional carers should consult them and try to involve them in the care process.
- If possible, a key contact person should be appointed from amongst the carers, relatives and close friends of the person with dementia to act as the main communication partner with the professional care team.
- Professional carers should, as far as possible, involve carers in care decisions and attend to the physical and mental wellbeing of carers.
- Professional carers should help carers to understand the progression of dementia in the final stage and the implications of any decisions they may be asked to make with regard to intervention or non-intervention linked to care.
- More research should be carried out into the identification of the signs of imminent death in people with dementia so as to ensure that appropriate treatment decisions are made and that appropriate support is provided to people with dementia and carers.
- Attempts should be made at the time of admission or failing this shortly after to ascertain the preferences, values, beliefs and wishes of the person with dementia in relation to various care issues.
- Healthcare professionals should respect the beliefs, values and practices of people with dementia and carers from different cultures and minority groups.
- Healthcare professionals should be trained in the management of pain, be experienced in the use of relevant pain assessment tools and be extra vigilant for signs of pain in people with dementia.
- The WHO three-step ladder for treating pain in cancer patients should be adapted for the treatment of pain in end-stage dementia.
- Pain detection scales should be refined so as to be more suitable for people with dementia and to distinguish more effectively between pain and discomfort or distress.
- Tubes and PEGs for artificial hydration and feeding should not normally be indicated for people with end-stage dementia.
- Unnecessary sedation should be avoided.
- Mechanical restraint should only be used in very exceptional circumstances and if used, it should be, recorded and monitored, and constant surveillance should be provided.
- Doses of medication should be reduced in accordance with the development and severity of the disease and/or weight loss.
- Measures should be taken to prevent falls whilst the person with dementia is mobile and even when he/she has lost mobility as it is possible to fall from chairs and beds.
Policy makers/the State
- End-stage dementia should when appropriate be recognised as a terminal condition requiring palliative care.
- People with end-stage dementia should be guaranteed access to palliative care/geriatric services.
- It should be borne in mind that many people dying from cancer, respiratory disease or heart failure will also have a co-morbidity of dementia which will complicate the provision of other specialist care.
- Palliative care services and facilities should be provided to people dying with/from dementia (irrespective of whether they have another terminal illness) which are affordable to people with dementia and carers.
- More public healthcare funds should be allocated for the care of people with dementia. This should include financial support for palliative care networks.
- Palliative care services in the home and in hospitals or residential care settings should be developed and/or improved.
- Free information on the availability of services and entitlement as well as guidance on how to apply for palliative care support should be available.
- Governments which do not have a system where anti-dementia drugs are reimbursed by the health authorities should be encouraged to develop such a system.
- Legislation covering access to palliative care services should take into account the nature of dementia and the progression of the disease.
- Carers should have access to free respite care in the home to enable them to continue caring for the person with dementia and in recognition of their valuable role and work.
- Measures should be taken to enable carers to coordinate their working lives with the task of caring. This should include measures to promote flexible working hours and/or paid leave to care for the person with dementia at the end of his/her life, as well as measures to protect their pension rights.
- Volunteers and volunteer associations providing palliative care support should be encouraged, supported and if necessary trained in dementia.
- A framework and standards for training should be developed in order to ensure that there is a sufficient number healthcare professionals who are trained in palliative care for people with dementia.
- It should be ensured that the financial remuneration and working conditions of healthcare professionals working in the field of palliative care of people with dementia are sufficiently rewarding so as to reflect the value of the work carried out in this domain.
- Research into palliative care for people with dementia should be promoted.
 In some countries, this person could be a legally appointed health care proxy, welfare attorney or “personne de confiance” (trusted person).
 Please also refer to the Mental Welfare Commission for Scotland’s guidelines on the use of restraint (“Freedom, restriction and restraint”) at: http://www.mwcscot.org.uk/newpublications/good_practice_guidance.asp
Last Updated: Monday 23 April 2012